Saturday, January 19, 2008

Short Hair

I don't want this blog to become just another "Kids Say the Darndest Things" compendium, but I have to share this conversation from yesterday if only because it's seemed like such a typical toddler-parent exchange.

I was just coming home in the late afternoon from getting my haircut. I've been wearing my hair short ever since Ben was born, and this latest cut was a particularly short, cropped style. Think Mia Farrow in her Frank Sinatra days.
Ben greets me at the door.

Ben: Where were you are?

Me: I was getting a haircut. Do you like it?

Ben: I want your hair to be fat.

Me: Well, it's short now, but it will grow again.

He comes over and tugs at my hair, runs his fingers through it, then walks away.

Ben: But now you're a boy!

Come to think of it, I read somewhere that the rest of the Rat Pack said that about Mia Farrow, too.

Sunday, January 13, 2008

An Older Woman

Ben and I went to Children’s Fairyland this past weekend. For those of you who aren’t Bay Area parents, Fairyland is a vintage pre-Disney children’s amusement park in Oakland that’s changed very little since 1950 when it opened.

One of the many reasons Ben loves Fairlyland is because each display has a metal storybook on a stand next to it. When you insert your “Magic Key” into the storybook, you can hear a recording (usually circa 1950) of a nursery rhyme, story or song. Most kids are done with these after one or two times through the tinny recording, but Ben likes to play each one a few dozen times, of course, usually managing to memorize it.

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The centerpiece of the park is a giant dragon slide. You get to the slide by walking up a long, long, long sprawling ramp with lots of switchbacks. It’s probably about two stories tall at its highest point: a Chinese-themed pagoda tower thing, but to me it looks about seven stories high, especially given that Adults Are Not Allowed On The Dragon Slide, according to the sign.

At first I was hoping to steer him away from it, since during Ben’s class field trip last Spring he had panicked at the top, creating a traffic jam of impatient toddlers. Chris had to go up and bail him out.

But he’s been showing so much more confidence with climbing and physical activity lately that I decided I wouldn’t put the kibosh on it if he were interested. The sign says that children under four aren’t allowed, but since we’re two weeks away from his birthday, I figured it was okay. I’m a spirit-of-the-law kind of gal.

As we approached the entrance to the ramp I pulled him aside and explained that he could go down the slide, but that he’d have to do it by himself, and if he got scared, Mommy would not be there to help him.

Just as he was processing all this, a girl whooshed by us. He turned and followed her out of pure excitement, and then he was gone; somewhere up that ten story ramp.

After a few minutes, I saw him come down the slide, feet-first on his stomach as usual. Before I could give him a hug of congratulations, the little girl whisked him away once more shouting, “Let’s do it again!”

I followed after and watched. She was probably five. She had dark wild curly hair. Her shirt was stretched out of shape and it was hanging off one shoulder like something out of Flashdance. She was sucking on one of those rings with a big purple candy gemstone. Her mouth and most of the area around it was sticky and purple from the candy.

She chattered and hollered various instructions to Ben. When I caught up with them, I suggested that Ben tell her his name and ask her what her name was. The words had barely left my mouth when she told us, “My name is Desiree Isabelle.” She grabbed his hand and shook it – firmly, no doubt. Ben, who luckily has picked up basic social scripts from memorizing books, said, looking completely amused, “Nice to meet you.”

They both went up the ramp again and came down the slide. Ben shouted for me at the top of the slide in the nervous voice that he uses when he’s a little scared, but only to make sure I was nearby. He boldly slid down the long, metal slide again.

At the bottom of the slide she put her arm around his shoulder and asked him to go again. He grabbed her hand and took it in his. “I want to hold hands,” he said. They ran off that way, hand in hand.

Most of my favorite movies are screwball comedies from the 1930s. They all have some sort of bookish, shy man who gets reluctantly swept off his feet and by an outgoing, somewhat eccentric female character who teaches him, through as series of misadventures, how to have fun.

This was a preschool version of those archetypes. And the best part was that my son was Cary Grant.

She continued to shout instructions and try to cajole him into one activity or another and eventually Ben wasn’t really listening. This is how most playdates look for us. Ben is in his own world while the other kid is attempting to get his attention. Then the other kid finally gives up, looking at me as if to say, “What’s with your kid?”

But somehow Ben and the little girl ended up over at the Three Little Pigs' houses, together in the house of bricks. In such an enclosed space, Ben couldn’t really ignore her any longer. I peeked through the window and Ben prompted me to be the wolf by saying the line: “Little pig, little pig, let me in!” And I obliged.

“Not by the hair on my chinney chin chin!” He shouted back. This clearly seemed to impress her. They laughed and jumped up and down and ran around pretending to be pigs running from the wolf.

We had made it up to the front gate by this time. The girl’s father was with us now. He had been trailing us at some distance the whole time; either his wise or simply exhausted parenting strategy.

I told Ben to say goodbye to his new friend. She reached out to shake his hand and he threw his arms around her. “Goodbye,” he told her as they embraced. He reached for her shirt and stretched it out even more, as if to get a good look down her shirt. And while this would pretty much spoil any other date, I think, all in all, this went rather well.

Wednesday, January 9, 2008

Syntax

Last night, Ben took off his socks and when I mentioned playfully that I could see his toes, he grinned at me and pointed to his pinky toe and said, "Aki pee."

Then we both launched in to the following little ditty in unison, counting down the rest of his toes: "Aki Pee, Penny Lou, Lootie Whistle, Mary Osso, BIG TOM BUMBO!"

Ben looked me straight in the eye and said, struggling at bit, "Who is called?...Someone teached me..."

He was asking, in his own way, "What was the name of the person who taught me that?"

"Therese." I reminded him.

My cousin, Jay, and his wife Therese visited us nearly a year and a half ago and Therese taught him this catchy, silly alternative to This Little Piggy. He remembers it, of course, and he remembers her.

"Therese." Ben replied, smiling sweetly. "Therese!" he said several times, like an old man savoring the memory of a first sweetheart.

I love hearing Ben's attempts to string words together on his own like this. "Who is called?...Someone teached me." It's something he never could have said several months ago, yet his syntax reveals how much Ben is like a person who is learning English with no native language to fall back on.

No wonder he resorts to echolalia. I would too.

His syntax sometimes reminds me of Alan Arkin in The Russians Are Coming, the Russians Are Coming.

"Emergency. Everybody to get from street."

And coming from Ben it's always music to my ears.

Tuesday, January 8, 2008

If you like Hyperlexicon, you'll LOVE...

It was my great fortune this week to be introduced to two amazing, insightful, beautifully written blogs from women who have sons that are on the spectrum. Susan Etlinger's The Family Room and MOM - Not Otherwise Specified are spots you should visit and add to your feeds.

I've found so much that I can relate to in these blogs, and each is chock full of links to useful resources for parents or anyone wanting to better understand children with special needs.

Truly, an embarrassment of riches. I may need to take a few vacation days just so I can hunker down and read every post.

Sunday, January 6, 2008

Owl Moon

Part of why I created this blog is to write about what Hyperlexia looks like in more accessible language and with more precise, specific description than the clinical checklists that parents encounter when first learning about the condition.

But words can only begin to get at what I'm finding is a staggeringly complex set of behaviors. Luckily, my husband, Chris, is an avid video blogger and has been chronicling moments of Ben's life for awhile. I'm borrowing this clip from his website so that I can show you, rather than just describe, one of the most amazing aspects of Ben's personality.

Many parents with hyperlexic children will attest to their phenomenal memory and ability to recite stories after hearing them only a few times. If you don't live with this day in and day out, you might assume that these recitations are robotic, Rain Man-type verbal stimming or tuning out, where the brain is simply "firing" independently, without comprehension of meaning. I think the team that evaluated Ben may have seen it this way. Here's how they described it in their assessment report a year ago:

Reuben's love of books is highly self-stimulating and serves to isolate him from the social world.


At the time, this was at least partially accurate. However, what we see every day is that the recitations of stories are, indeed, a kind of play. Sometimes more social - when he enlists us in the drama - and other times more solitary. Either way, I believe that Ben uses narrative, which seems to be hard-wired in his brain, to help him navigate and participate in the world just as it also gives him a way to withdraw from it.

This footage shows Ben taking an evening walk last summer with Chris and reciting the story Owl Moon by Jane Yolen. If you watch and listen carefully, you'll see that he understands the meaning - at a basic level - of the incredibly poetic text and is using the walk to act out the story, but also uses the story to as a way to engage in an evening stroll with his dad.

The clip is a bit long, but Chris chose to leave it mostly unedited just to show Ben's surprising capacity for memorization and sustained focus (he was just three and a half at the time).

Here's Chris' description:

The story, in this case, is one of the most beautifully written and illustrated picture books in our collection, OWL MOON, the 1988 Caldecott Medal winner by Jane Yolen.

It's the story told in the voice of a young girl walking in the snowy woods, the first time she's been allowed to accompany her father on a late night search for owls.

The boy and I have taken this walk many times after dark. On one beautiful evening back in August 2007, I brought my camera along.


Wednesday, January 2, 2008

Toys

One of the things that brings out feelings of sadness for me about Ben’s condition, strangely, is going into a toy store. I find myself attracted to all the toys and activities that I would like to do with Ben and imagining an idealized picture of how we should play together. Each of these little fantasies only serves to remind me of Ben’s narrow repertoire of play, a function of his need for sameness and predictability.

A stroll down the aisles of a toy store feels, at times, like an exercise in futility.

Lincoln Logs, Legos, Tinker Toys? He doesn’t enjoy building structures – only watching me build them so he can knock them down with various vehicles.

A set of dishes for playing restaurant or tea party? A set of finger puppets? His pretend play consists of re-enacting stories from books and videos he already knows. Unless I can introduce something as a prop in an existing script, it may as well not exist.

Art supplies for drawing and crafts projects? His deficits in fine motor skills mean that these activities are hard, and hence, not fun. He usually refuses my attempts to get him involved in any art project.

Board games and card games? The concepts of turn taking and rules of play haven't taken root in his brain, and in a matter of minutes the game pieces end up scattered and discarded.

A croquet set? Badminton? His preference for indoor play makes initiating outdoor activities like pulling teeth. Lack of gross motor coordination when it comes to catching, throwing and hitting doesn’t help, and most of these things involve more turn-taking and rule-following.

I find his narrow range of activities frustrating. And being in a toy store only tends to exaggerate my perception of how Ben spends his time at home:

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But the futility I feel is really about me, not Ben. I end up wandering through toy stores wishing for a different kind of kid. A kid who will indulge my idealized notions of parenthood rather than trouncing them. The kind of kid that I believe every other parent has, but that actually does not really exist.

The toy industry, no doubt, is bonkers about our demographic: a child obsessed with one kind of toy such that he will consume any variation of it that is put on store shelves, combined with a parent who simultaneously wants to make the child happy by feeding the obsession and is desperate to find any other kind of toy that will displace the obsession. The trap is set to just keep us buying more and more stuff.

I think that the key to making that narrow sliver of “other” bigger is not new stuff but maybe just changing the routine. When Ben is at school or in a new environment, he is much more adventurous and tends to explore things he would not show an interest in at home. He often branches out by following the lead of other kids, especially those with whom he has close relationships, like his cousins.

At home on Christmas morning, Ben virtually ignored a new, shiny, red tricycle in favor of three small freight cars for his railroad empire. It was not what I had imagined when we decided to buy the tricycle, expecting it to trump all other gifts with joy-bringing Christmas magic.

But later at my mother-in-law’s house, the most popular toy of the day was a 99 cent plastic slinky that he and his cousin used – independent of any parental suggestions or expectations - to invent the most awesome springy game of tug-o-war.

Friendship + found objects - expectations = fun.